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        New Message Board Archives >> 2002 Posts >> Just Had My First!
        
(Message started by: Clair on Dec 16^th, 2002, 5:21pm)

Title: Just Had My First!
Post by Clair on Dec 16^th, 2002, 5:21pm

I had my first cluster headaches 2 days ago (Sat 12/14/02). The next day I had twinges that didn't explode, but I was terrified it would. I've only had 3 migraines in my life. The first about ten years ago. The other 2 within this past year. Only the first included a headache, the other 2 only blurry vision. But this, this headache was like no other! Three times it happened. It went away and came back, went away and came back! I thought I had an aneurysm or something. Today at work (Monday 12/16) I'm describing to the people I work with and they don't understand. They think they do. So I get on the web and use key words "migraine headache stabbing pain", saw a description of cluster headaches which described it to a T. On the one hand I was relieved, it was real, it exists as something special. On the other hand, what I'm reading is all bad news. There is no trigger, no way to prevent them. I can't accept this. I cannot live with this. What about alternative treatments? Ginkgo, that help oxygenate the brain, usually I take this but slacked off recently. What about liquid oxygen? Drops that you add to water? Relaxation? Acupuncture? It's some kind of vascular thing right? There must be some way to keep the blood vessel from doing whatever it's doing? I just can't accept this could happen again and again. Sure am glad this site is here.

Title: Re: Just Had My First!
Post by echo on Dec 16^th, 2002, 5:32pm

Searching through the archives and medications portion of this MB you will be able to identify several preventative medications available. CH is a mutant of a headache, what works for some will not work for others. Popular treatments are non-rebreathed O2, verapamil, lithium, imitrex and a host of others.
Sorry to read that CH is what you have. Visit a neuro for additional information.
Welcome to the board.

Title: Re: Just Had My First!
Post by Bob P on Dec 16^th, 2002, 6:10pm

Nope. Current research says it's a hypothalmic thing. The blood vessel dilation is a result, not a cause.

O2 may help abort an advancing attack but it will not prevent them from starting.

Glad you're not accepting the bad news you read. You can help us change it.

Title: Re: Just Had My First!
Post by Charlie on Dec 16^th, 2002, 6:10pm

Sorry Clair. I hate to learn of someone new having this horror. I can tell you that if you look around this place, read a lot of our good ideas, bad ideas, and even some of our nonsense, you will find help to manage this thing in some way. There are also some drug combinations and ideas that help many here. You will read a lot of them.

This is a link for Simon's letter which is a terrific thing to show your fellow workers, employers, and family. It's a great thing to copy and it's the best we have. It's worth a look:

http://www.ouch-uk.org/ch/note_colleagues.cfm

Here is my late neurologist's technique:

Dr. Wright's Circulatory Technique

This is not transcendental meditation, imagery, relaxation, or anything psychic. It's entirely physical and takes a lot of work and concentration. Give this method a good workout. It’s not a miracle, but it’s been helpful to many.

When I was diagnosed, my neurologist said to treat this as a vascular problem. I was told to concentrate on “redirecting” blood circulation in order to retard flow to the head. This is done by trying to “send” blood into the arms and hands or other extremities. When properly done, your hands will become warm and redder with increased circulation. I also found it easier to concentrate on one hand.

This relieves just slightly, the pressure on the affected vessel, which indirectly causes our pain. We all have this ability but it can be exhausting. I was often able shorten my attacks from about half an hour to no more than a few minutes. Sometimes, when awake, I could entirely abort the attack IF I KEPT AT IT. Often, I would suffer only minor discomfort instead of excruciating pain. Do not stop just because your hands are warm or redder. Keep this up until you are sure it's subsided. If you let up or lose concentration, it’s very hard to restart this process. It may take some time but when this works, the relief is almost immediate.

I learned this from the doctor in a few minutes. He simply told me to try to keep blood away from the head. He thought it easiest to concentrate on the arms and hands but any place that works for you is fine. He said to think of it as "filling your hands" with redirected blood. It’s important to keep at it THROUGH the pain. This will be difficult, but it’s the only way this technique will work. Don’t let up until you are sure the attack has ended.

This will not always work, but I think it will always have at least some effect on the severity and duration of the attacks. It can be useful between medications or while waiting for some other drug to take effect. All it takes is a little practice. It was fairly easy to learn and what I'm writing here is more than I got from the doctor, as I've drawn from my own experience.

When awakened in horrible pain, it’s very hard to focus, but I think it’s always worth a try. This costs nothing but hard work, is harmless, non-invasive, and it gives us a fighting chance.

I wish you the best of luck - Charlie Strand

Title: Re: Just Had My First!
Post by Roxy on Dec 16^th, 2002, 6:18pm

Hey Clair, so sorry you're here. Hope you can find a good Dr., I'm still looking. The web site recommends doctors in your area, so check them out, and go see one of them. Hope we can help you.

R

Title: Re: Just Had My First!
Post by Drk^Angel on Dec 16^th, 2002, 6:32pm

Welcome to the board! Sorry that the beast is running over your cranium with Mack truck with rusty, boiling hot snow chains on the tires going about 80 mph. Good luck!

PFDAN...................................... Drk^angel

Title: Re: Just Had My First!
Post by Mark C on Dec 16^th, 2002, 6:54pm

Welcome Clair,
Search this site and the OUCH site for all of the information you need to start your battle. Here is a good HA diary. Good luck,
Mark

http://www.headaches.org/professional/educationresources/PDF/headache_diary.pdf

http://www.eas.purdue.edu/~dano/personal/anim/WELCOM8.GIF

Title: Re: Just Had My First!
Post by cootie on Dec 16^th, 2002, 9:30pm

Greetin's Clair.......... :) :D :) :D :) :D :) :D :) :D :) :D :) ;D

Title: Re: Just Had My First!
Post by dodger on Dec 16^th, 2002, 10:02pm

:'(Hello Clair. Sorry to hear your coming aboard. Are you positive these are clusters ? If they are, don't get excited, just commit yourself to dig your heels in and fight the beast as hard as he fights you. There are people on this site that have been doing it for years. Iv'e been doing it for 20. Finding this site was the best thing you could have done. Hang in there, and don't give in. GOOD LUCK.

Title: Re: Just Had My First!
Post by cluster0557 on Dec 16^th, 2002, 10:28pm

Claire:

Sorry to see that you now have clusters also. I know you have heard this but OUCH and this board can help at least give you suggestions.

I am in Fifth year with these __MN things but have found that abortives help like Imitrex Injections, insurance can and will cover (BCBC and Great West at least) and a resonable prevent program from a good Neuro will help reduce the god awfull pain when one occurs.

Find a Neuro who has treated clusters. Don't go to some general Neuro who has just heard of them. I made tha tmistake and I was a walking pharmacy (and zombie) through my second cluster season. ( The first one was grin and bear it season stupid me).

I am also seeking relief from the constant hits in my head but instead of level 10 pain every day I am down to bearable levels thru a good Neuro.

Good Luck
Jim

Title: Re: Just Had My First!
Post by SommelierCH on Dec 16^th, 2002, 10:59pm

Claire,

As always a double edge welcome. Sorry you had to find us, but glad you are here. Put on a hard hat, mouth guard and thigh high boots and wade right in.

What works for me is a triptan, Maxalt MLT 10mg. or Zomig ZMT 5mg. (fast acting, under the tongue dissolving tablets) combined with oxygen therapy. You can’t get many Maxalt tabs from insurance (6 per month max. for me) so you have to save those for the Big One and you can’t take more than 2 in any 24 hour period, so the oxygen is absolutely necessary for all the other times you feel the shadows creeping in. Go to the search button in the top right corner and type in “oxygen” and read up. This site is your one stop information resource, so start reading all the categories on the left hand side of the page, read it all, the more knowledge you have the better you can communicate with the medical community. Be sure to read about and do a search for “triggers”, these are catalysts that can really set us off. My triggers are alcohol (even the smallest amount, like a non-alcoholic beer) and bright light in my right (cluster side) eye. When I feel the shadows creeping in I hit the Oxygen and that pushes them back. However, when I’m asleep I can’t feel the shadows increasing and I wake up with the Big One. Jonny clued me in that if you take abortive triptans (I use Maxalt MLT 10mg. or Zomig ZMT 5mg., both are quick dissolving tabs) before going to bed, they can prevent that night time attack, especially if you get hit, like I do, within 2 hours of going to sleep. The half-life of both of these tabs is in the 2-3 hour range. This has enabled me to get quality sleep these last 2 weeks.Avoiding triggers during your cycle can dramatically affect the intensity, duration and number of attacks.

If you keep a headache Diary, apparently it helps some Doctors and Neurologists to diagnose your condition. Here are links that give info and ready made forms for your journal. This should give you some much needed ammunition prior to your office visit and, it should help speed up the process.
Form for Headache Diary:
http://www.headaches.org/professional/educationresources/PDF/headache_diary.pdf
http://www.headaches.org/professional/educationresources/PDF/howto_diary.pdf
The cumulative amount of knowledge residing within these people on the board, is amazing. Give them as much info about your problem (see “Hints for your first post”) and they will be able to help that much more.

Get to a Doc, then get a referral to a Neuro. Print out some of the info from this site and take it with you.

PFDAN,

David J.

Title: Re: Just Had My First!
Post by BobG on Dec 17^th, 2002, 4:44am

Ginkgo, oxygenate the brain, liquid oxygen Drops that you add to water? Acupuncture? All very questionable.

Click this and look through the site.
http://www.quackwatch.com/

Relaxation? See my tag line.

Title: Re: Just Had My First!
Post by OneEyeBlind on Dec 17^th, 2002, 6:09am

Welcome to the board Clair !!! :) :) :) :) :)

Title: Re: Just Had My First!
Post by suzy617 on Dec 17^th, 2002, 6:14am

Welcome to our cluster family Clair!!!!

suzy

Title: Re: Just Had My First!
Post by cathy on Dec 17^th, 2002, 8:22am

:) :) :) :)

Welcome to Clusterville, sorry you've had to become a member....they're a great bunch really...as long as you watch what you post.... ::)

Cathy

Title: Re: Just Had My First!
Post by RC_Cola on Dec 17^th, 2002, 9:46am

Welcome Clair!!

Annette